How well are we doing? Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery

Purpose: The satisfaction of families of adolescents and young adults with a diagnosis of cerebral palsy with the service delivery they had experienced in the areas of health, education, recreation, employment, housing and transportation was examined. Common themes across the six service areas were identified. Method: Forty-nine adolescents (13 - 15 years) and 39 young adults (19 - 23 years) and their families rated their satisfaction with services and then participated in semi-structured interviews to discuss their experiences. Results: Using a constant comparative method of analysis, common themes were identified from the transcribed interviews. Four themes were identified and named: caring and supportive people; fighting and fatigue; communication/information; and disability awareness. Conclusions: Families continue to experience dissatisfaction and frustration with service delivery in the six areas examined. Both bureaucratic structure and attitudes of service providers contribute to their dissatisfaction.